Day 12: Acceptance is Loud Hands

Ben uses his hands to explore his world.

There is a term in the autism world known as quiet hands. 

If you haven’t heard of it, you can read a heart-wrenching yet eloquent description of it here from someone who experienced it firsthand as a child. 

Quiet hands is something taught during Applied Behavior Analysis (ABA), one of the most popular therapies for autistic children.  

I won't spend a lot of time describing ABA in this post.  Suffice it to say that it is a behaviorist therapy model where children are positively reinforced when they perform certainly socially acceptable behaviors, like raising their hand on command.  The goal of ABA is to reduce certain "problem" behaviors so that the autistic child appears indistinguishable from his peers.  

Many parents swear by ABA and the progress that their child makes in the therapy.  Many parents even tout that their child has been cured of autism because of ABA.  However, the progress that the child appears to be making comes with a steep price.  

 As Sparrow, another eloquent autistic blogger describes, “But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.”  You can read the article in its entirety here- 

Ben does not take part in ABA therapy, but let me offer this disclaimer.  

Please understand that I do believe that therapy is important.  Ben receives speech, language, and occupational therapy that have been extremely beneficial to him.  He has also participated in social skills "friends" groups.

I know that many of you may have a child that is involved in ABA therapy.  I have even heard that not all ABA therapies are the same.  Some call themselves ABA therapy for insurance purposes but do not practice techniques like this.  I just ask that, for your child's sake, you observe and evaluate carefully.  Read the articles that I've linked above in their entirety and watch for the warning signs the bloggers mention.

I also believe that there are harmful behaviors that need to be reduced and eliminated, especially when the child is causing injury to himself and others.  Hand flapping is neither harmful nor injurious to anyone.

During ABA therapy, children learn the phrase “quiet hands” when they are very young.  When the child hears the words “quiet hands”, they are to stop their hand flapping and drop their hands by their sides.  If the child doesn’t comply, then the adult will intervene and physically still the hands.

I have to wonder why the adult feels the need to eliminate hand flapping.

Is it because the adult feels uncomfortable with the flapping because it doesn’t appear to be “normal” behavior?  If so, what is normal anyway?

Is it because the adult is afraid that the flapping detracts from learning?  If that’s the case, research actually suggests that certain stimming behaviors actually increase focus and concentration, and if they are eliminated, then the person has even more difficulty completing the task at hand.  On a side note, there is also research that shows that eye contact can be overstimulating, and, for some, making eye contact actually makes it harder to listen and pay attention.  Our eyes are not our ears.

Is it because the adult believes that the hand flap serves no purpose, and should therefore be eliminated? 

Ben’s stimming behaviors and hand flaps actually serve several purposes.  First, it is a way for him to express emotions.  Sometimes stimming is soothing, such as when he rhythmically rocks himself to sleep.  When he is filled with joy, his excitement overflows into his hands and they flap rapidly.  He uses his hands to explore his world when he runs his finger along the edge of a wall or strokes the soft surface of a blanket.  Other times he might stim to help him focus in school, such as when he taps his pencil while he's thinking.  Quieting his hands means taking away one of his senses.  Some equate this to duct taping the mouth of a neurtypical (non-autistic) person or taking sign language away from a deaf person.  Obviously in a school setting, Ben's stimming should't become a distraction to his classmate's learning.  However,  I remember from my teaching days that while these types of student behaviors would drive me crazy, the other children wouldn't even notice most of the time.  Should we take away a helpful coping technique just because the grown ups are bothered?

Is it because the adults need to be in control?  There are many reasons why I am opposed to forcing compliance on a child.

ABA therapy “works” because children learn that they will be rewarded for doing what adults want them to do and they will be punished when they say no.   It seems innocuous enough.  The adult places his hands over the child’s to reinforce “quiet hands”.   But when this happens time and time again in therapy, in many different contexts, these children learn that they must comply with what adults say- no matter what.  I believe this sends the wrong message.  Children learn an implied message that the adult never intended.  They learn that they are not in charge of their own bodies, because, one way or another, the adult will get his way.

Too many autistic children have grown into adults and have become victims of abuse because they have learned that adults can have their way with them, because their bodies are not their own. 

As Sparrow goes on to explain,  “You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?”

This is why I encourage Ben to make his own choices.  If he chooses to disobey an adult, there will be consequences, but it will be his choice.  He will always know that his body belongs to him and that he is in control of decisions made about it.  I want to teach him to think for himself.

I don’t care if Ben’s hand flapping makes him look different than his peers.  They already know he is different and, thank goodness, they like hanging out with him anyway.  We are all different in some way.  Different doesn’t mean wrong.

I want my son to grow into an independent, capable, successful adult who is in control of the decisions that he makes. 

I want him to have a strong sense of self-worth.

I want him to know that there is nothing wrong with the person who he is.  There is no need to fundamentally alter the person he is inside. 

This is why I celebrate loud hands.

Day 5: Acceptance is an act of Faith

Today is Easter Sunday.

Easter may mean different things to each of you, but this is what is means to me.

Easter is so much more than eggs and chocolate bunnies.

To me, is a story of love.

It is a story of sacrifice and of victory.

A Father’s sacrifice of his Son so that we may be free.

A Son’s sacrifice of his life in exchange for our sins.

And, ultimately, a Savior who faced and overcame death so that death would no longer have a hold over us.

His sacrifice was made long ago, and yet those of us who believe accept the price that He paid on faith.

Accepting this on faith is the very key to our salvation.

I have no physical evidence of this sacrifice, and yet still I believe.

For me, faith is about acceptance in the absence of physical proof.

In the words of Dr. Martin Luther King, “Faith is taking the first step, even when you can’t see the whole staircase.” “

Walking in faith is not always easy for me.

Faith is something that my Type A personality cannot control.

I have learned to let go and accept things as they are.

I have learned to accept that my son for who he is, without the need to change him into someone who he is not.

Acceptance is not resignation.

It is not giving in or giving up.

It is letting go of the fight against things that cannot change.

And when I let go and accept, then I am truly free.

I accept my child for who he is.

I have faith that God will take care of the rest.

Day 4: Acceptance is Trust

Love is about trust.

With acceptance comes trust.

And trust brings love. 

Love is accepting a person for who they truly are- not your idealized version of the person who you would like them to be.

Trust is hard.

It is hard to know who or what to trust.

The autism community is a community deeply divided.

Sadly, there are many who are seeking to capitalize on a parent’s confusion, desperation, and grief.

And then, there is the conflicting advice from so-called experts.

There are dozens of different therapies, many promising a “cure” for your child.

There’s the gluten and casein free diet.

There are thousands of websites, forms, and “support groups” filled with people professing to have the answers.

It is easy to lose trust.

Because experts can be wrong.

And therapies and diets that work for some children may not work for your child.

Other therapies are downright dangerous.

And too many so-called support groups focus on negativity and become battle grounds for hot-button issues.

So, in the midst of so much chaos and confusion, who do I trust?

For a long time, I placed the burden of trust on myself.

Soon enough, this burden became too much to bear.

I do not have all the answers.

I cannot fully understand what it means to be an autistic person living in this world.

And the stakes are very high.

I am making decisions that impact another person's life.

Like all parents, I worry about the future.

I worry how he will do as he progresses through school.  He is a smart kid but a different kind of learner.  The traditional classroom is not geared towards his needs. 

I worry that as he gets older, his differences will become more pronounced. 

I worry that his friends will notice these differences and judge him for it.  After all, we live in a society that values conformity over uniqueness.  I worry about bullies.  I worry that he won't know how to stand up for himself- to speak up when he needs help.  I worry about what could happen when the grown ups aren't watching.

I worry about his future after school.  I worry about what the world will be like when he becomes an adult.  Will he find a good job?  Will he start a family?  Will he be successful and independent?  Will the world be any closer to understanding and accepting those who are different?

After countless days and nights of worrying, I remembered that this is not my burden to bear alone.

I trust that others who are ahead of me on this journey are paving the road for my son and others like him.

I trust my husband to be my sounding board and partner when making the decisions, both little and big.

I trust Ben to know himself well enough to advocate for his needs.  I’m teaching him to be that advocate now so that when the time is right, he can do this on his own.

Ultimately, I trust in God to guide our family on this journey.  When I give the burden of my worries to Him and trust His plan, I am always filled with a deep sense of peace.

 Trust alone is not enough.

But trust is important.

Because it’s not about me and what I think is best.

It's not about finding a cure or changing him into a person who he is not.

It's about helping him to be the best version of Ben that he can be.

I have to give up control.

I have to give up my worries.

I have to trust.

Trust in us.

Trust in him.

Trust in Him.

And together we will find our way.

Day 3: Acceptance is Friendship:

"I get by with a little help from my friends." -The Beatles

Making friends can be tricky, especially for those who have difficulty with social interactions. 

An "expert" in the field once told me that Ben doesn’t understand what it means to be a friend because he doesn’t interact in typical ways. 

I disagreed. 

I was told to encourage Ben’s friendships with typically developing peers and not with those on the autism spectrum, because typically developing peers would be better role models and those on the spectrum would reinforce behaviors that were not "socially appropriate".

I ignored this advice.

I knew in my gut that this advice was wrong.  

This person looked at my son and saw limitations.  

I looked and saw possibilities.

It took me awhile to get to the place where I trusted what my heart was telling me to be true.

It hasn’t always been easy. 

Last year I wrote a story on this blog about one of the first moments when I truly knew that Ben was autistic.  You can find it here.  On that day two years ago, I parked my car in the parking lot and watched Ben’s preschool class interacting on the playground.  All of the other children were laughing, running, and playing together.  They were weaving in and out of playground equipment, playing games of tag and chase.  When I finally spotted my son, I saw him slowly walking the perimeter of the playground, trailing his hand along the fence.  No one else was around him.  He was clearly lost in his own thoughts.  I watched him circle the length of the playground over and over again.  He was all alone.  It was as if an invisible wall separated him from the others.

Today, Ben is six years old and is in kindergarten.  He is in an inclusion classroom that is comprised of children with and without disabilities.

And he has friends.

He has friends who are autistic and friends who are not.

Ben's best friend is on the autism spectrum.  Their friendship is a special one because they understand each other in a unique way.   

He has another close friend who happens to be a girl.  She is a bright, smart "typically developing" kindergartener.  She may be a good "role model," but I can guarantee that this is not why she chooses to be his friend.  

I learn so much about acceptance by watching Ben play with his friends. 

There are no false pretenses and no judgments. 

They accept and value the person who he is.  

They enjoy playing with him and spending time with him. 

Ben talks about his friends often. 

He asks to send pictures to them of things he knows they will like.  His best friend is in England on Spring Break and he saw a picture of him next to the soldiers, so Ben insisted on taking a picture of himself next to his toy castle, standing straight and tall like a soldier.

And he’s learning lessons of kindness, generosity, and trust through their example.  

And they are learning from him.

Two years ago, Ben wandered the playground alone.

Fast forward to this year.  

It’s Spring Break and we’re meeting Ben’s friend for a play date at the local playground.  I park the car, and Ben's whole face lights up when he spots her.  "Hurry, Ben!" she calls, impatient to get the fun started.  Once the playground is in sight, they race off together.  I watch as they climb into a two person swing and laugh with glee as they figure out how to work it together.  “Come on, Ben!  Watch this, Ben!” his friend calls over and over again, and they run off to a massive climbing structure that leads to a huge slide.  One shoots out through the tunnel at the bottom and then the other zooms out directly behind, and off they race again.  

Gone is the little boy who wandered the edge of the playground.  

Gone is the invisible wall separating him from others.   

Ben is clearly happy in the company of his friends, but he is still Ben.

He still enjoys his space and his quiet time.  

He still loses himself in his thoughts and his world of imagination.  

His friends understand this.  

They give him his space when he needs it or they join his imaginary world and become characters from his imagination.   

True friendship doesn't come from a place of pity nor obligation.  

It’s not a community service project that someone fulfills to feel like a better person.  

It does not put one person in a position of power over another.  

Friends do not try to change one another into someone who they are not.  

True friendships are genuine, without pretense.  

And so it is Ben and his friends.  

Children, in their innocence, are quick to accept one another as they are, as long as the adults surrounding them create a community of inclusion, tolerance, and acceptance.  

And, because there should be no conversation about Ben without including him, here are Ben’s reasons why he likes his friends, shared here with his permission.  As the Autistic Self Advocacy Network says, "Nothing about us, without us!"

“Nikki is my friend because he does cars with me.  I like cars.”

"Emily is my friend because she plays with me all the times.  Playing makes a good friend.”

“Harry is my friend because I love him a lot and he plays Legos with me.”

“Friends make me feel happy.  The End.”

My hope is that his friendships will continue to grow as he grows.

I know the road ahead will not always be an easy one.

But the road is a little smoother when we are surrounded by friends who accept us for who we are.

**Edited 2 years later**
Recently Ben talked about one of his friends from this article, the little girl named "Emily" whom he hasn't seen since kindergarten. He told me, "She is the one who taught me to be an artist. She is the one who encouraged me and showed me how to color in the lines." That year, she made pictures for him that came home in his backpack nearly every day. Now, years later, he is making pictures for her.

Day 2: Acceptance is Respect

Another key ingredient to autism acceptance is respect.

Respect comes in many different forms.

As Jess from Diary of a Mom explains, “A message of respect doesn’t mean there are no tough days, no challenges…but it does mean that we need to carefully incorporate autistics into these message and not lose sight of their value and dignity.”

Here are five ways to show respect to autistic individuals:

1)   Respect by communicating in new and different ways, and listening beyond words to truly understand.

Most individuals on the autism spectrum have difficulty communicating with others.  My son has pragmatic language delays.  Pragmatic, or social language, includes things such as initiating a conversation with another person, talking back and forth, and building off the ideas of others.  This is why I encourage the server at the restaurant to ask Ben for his order, along with the barista at Starbucks, and the teller at Toys R Us.  There are few ways to make conversation easier for an autistic person.  First, give them plenty of time to think before expecting them to answer a question.  This may mean pausing for an almost uncomfortable amount of time to allow the person time to process and think.  This may also mean understanding that the person may not give you eye contact or respond in traditional ways.  Some people on the spectrum communicate through scripts, which could be memorized snippets of dialogue from movies, TV shows, or You Tube videos.  Others, like my son, like to ask certain questions over and over, because he seeks comfort in the familiarity of the routine and the security of the answers.  Pay attention to the context in which the words are used rather than the words themselves to discern what the person is truly trying to say.  Carefully observe the person's actions and gestures, as these will often convey more meaning than the words alone.  Some individuals on the spectrum cannot speak, but this does not mean that they have nothing to say.  Communicate with them anyway.  Respect that when a person is upset or in the throes of a meltdown, their language may shut down completely.  Respect the person's need for space and a safe place to find their calm again.

2) Respect the power of words and talk about strengths first
Too often, conversations about autism focus on a person’s deficits.  I’ve seen many instances where adults discuss a child’s autism in negative terms in front of the child!  The adults have no idea the damaging impact of their words can have.  Instead of focusing on a person’s weaknesses, flip the script and talk about strengths. Look for examples of what the person is doing well and encourage

these positive behaviors. 

3)    Respect by learning from the perspectives of others. 

Remember that autism is a spectrum and others will have different points of view based on their experiences.  You may not agree with everyone’s philosophy but respect that their journeys are different from yours.  Listen to autistic adults, because they understand autism better than any professional.  We must respect others for their place in this journey but this does not mean that we have to compromise our own beliefs. 

4)   Respect by practicing inclusion.

I’ve read so many sad articles that go something like this.  An autistic child invites every kid in his class to a birthday party, only to have no one show up.  It’s important to remember that autistic individuals may have difficulty with peer relationships, but they still want to be included.  Show respect by including them in birthday parties, events, and family gatherings whenever possible.  Seek to make the environment as comfortable as possible.  And show kindness and understanding if the person needs a quiet space when the environment becomes too overwhelming.   Inclusion has be more than simply a name.  It take active involvement to make it truly work.  Ben has been lucky to be part of an inclusion classroom this year and he has made so many friends who he spends time with both in and out of class.  This could not happen without the amazing team of teachers who work hard to create a loving, supporting environment for him and his classmates.  He also has a loving family who accepts him for who he is and he has had more trips and adventures in his short life than many adults!  He has traveled by train, airplane, cruise ship, and everything in between!  Inclusion benefits everyone.  

5)   Respect by avoiding assumptions and stereotypes

There are so many myths out there about autism that can be downright damaging.  Some that are particularly hurtful are the myths that autism is caused by bad parenting, and that autistic people feel no empathy or affection.  These myths are not only untrue but perpetuate feelings of pity and place barriers between autistics and the rest of the world.  My son doesn’t need people to feel sorry for him.  He is a vibrant child with many talents and strengths.  He may have different challenges from other children, but we are addressing these and he is showing growth every day.  He is also one child with autism.  He does not represent every autistic person.  He is different from his best buddy in his class who also happens to have autism.  Both boys are quite different from many, many others on the spectrum.  Don’t make the mistake of thinking you know everything about autism because of your experience with one person.  

The best way to show respect is to value the individual and his or her unique strengths.  Seek to understand and learn from that person.  You’ll be happy you did!